Hi I'm new to the site. Current DMT--
Aubagio. First dose 10/2/14. It's been 11 days and I've had a headache since day 1, nausea (worsening) since day 3 and palpitations that started yesterday. All of which I've been told are documented effects. I'm going to give it a serious effort. Therapeutic level isn't achieved until about 3 months, so I need to at least give 6 -12 months after that to see if it's as effective at keeping the relapses at bay as Ty was.
A little history--
I was diagnosed with RRMS in 1995. I am fortunate to be a patient of one of the nation's best; Stanley Cohan, founder of the Providence Multiple Sclerosis Institute of Oregon. I've been with him since 2008. Prior to that, I was with 3 other neurologists. One didn't think DMT was proven, and thought monthly IV steroids was the best course. The next started me on Copaxone, but I developed angioedema and had to come off. Then Avonex, which on top of making my life miserable (aches, fever, headache) for 5 years, left me with relapse after relapse. Rather than consider something else, he added course of monthly steroids in conjunction with the Avonex.
I decided that there had to be some other option. I switched neuros again, and the first thing I found out was that Avonex wasn't working because I'd developed antibodies to it. I hated injections. HATED THEM. I was happy when he told me about Tysabri. While I tested JCV positive before I even started, given my advanced and progressing number of lesions the benefit outweighed the risks. I was facing the reality of going SPMS and that scared me more. I had quarterly JCV index levels drawn, and knew what to watch for.
My quality of life for the first time in 14 years was actually GOOD. Better yet, Ty had NO side effects for me. My lesion progression slowed. During the 4 years that I was on Ty I had to mild relapses of optic neuritis. Just two relapses in 4 years! While my JCV index slowly trended upward, we remained cautiously optimistic that I could continue. But Aug 25, 2014, I found out that my JCV index had spiked from .7 (over .9 is HIGH RISK) to 1.77. I had to stop immediately. My risk of getting PML went from 1 in 2500 to 1 in 118. Now the risk did outweigh the benefit. ENTER: AUBAGIO.
Anyway, welcome any feedback from those that have been through the first 6 months of Aubagio. Thanks!
** Moderator's note - Post broken into paragraphs for easier reading. Many people with MS have visual difficulties that prevent them from reading large blocks of print. **
Aubagio. First dose 10/2/14. It's been 11 days and I've had a headache since day 1, nausea (worsening) since day 3 and palpitations that started yesterday. All of which I've been told are documented effects. I'm going to give it a serious effort. Therapeutic level isn't achieved until about 3 months, so I need to at least give 6 -12 months after that to see if it's as effective at keeping the relapses at bay as Ty was.
A little history--
I was diagnosed with RRMS in 1995. I am fortunate to be a patient of one of the nation's best; Stanley Cohan, founder of the Providence Multiple Sclerosis Institute of Oregon. I've been with him since 2008. Prior to that, I was with 3 other neurologists. One didn't think DMT was proven, and thought monthly IV steroids was the best course. The next started me on Copaxone, but I developed angioedema and had to come off. Then Avonex, which on top of making my life miserable (aches, fever, headache) for 5 years, left me with relapse after relapse. Rather than consider something else, he added course of monthly steroids in conjunction with the Avonex.
I decided that there had to be some other option. I switched neuros again, and the first thing I found out was that Avonex wasn't working because I'd developed antibodies to it. I hated injections. HATED THEM. I was happy when he told me about Tysabri. While I tested JCV positive before I even started, given my advanced and progressing number of lesions the benefit outweighed the risks. I was facing the reality of going SPMS and that scared me more. I had quarterly JCV index levels drawn, and knew what to watch for.
My quality of life for the first time in 14 years was actually GOOD. Better yet, Ty had NO side effects for me. My lesion progression slowed. During the 4 years that I was on Ty I had to mild relapses of optic neuritis. Just two relapses in 4 years! While my JCV index slowly trended upward, we remained cautiously optimistic that I could continue. But Aug 25, 2014, I found out that my JCV index had spiked from .7 (over .9 is HIGH RISK) to 1.77. I had to stop immediately. My risk of getting PML went from 1 in 2500 to 1 in 118. Now the risk did outweigh the benefit. ENTER: AUBAGIO.
Anyway, welcome any feedback from those that have been through the first 6 months of Aubagio. Thanks!
** Moderator's note - Post broken into paragraphs for easier reading. Many people with MS have visual difficulties that prevent them from reading large blocks of print. **
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